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Help needed, neuro symptoms

jula

jula

Peer Supporter
Hello! I decided to write here as I will really need some support. I was diagnosed with Lyme disease and took antibiotics. One of the ones I took is associated with rare but serious side effects (it can cause tendon and neurological problems). I realised it after taking it and I read horror stories about it. I developed horrible anxiety as one day my jaw started hurting, then I had some burning in my hands and every day brought a new symptom and horrible anxiety. Probably I was already in a vicious cycle. I got so scared my hands, arms, legs behind the knees were on fire and I had an impression all my tendons hurt. I didn’t sleep for 3 days as I felt that I was suffocating. I felt pain everywhere, I took tramadol and sleeping pills and nothing helped. I couldn’t walk or do things. My family was terrified. I was finally taken to the hospital and they run blood tests, checked my heart and breathing and sent me home. The blood test was perfect, no inflammation - I immediately felt better and tried to convince myself everything will be fine and it was probably just one big somatization from the panic attack. But after a couple of days I again started feeling more anxious. I still had some burning and pins and needles (but I think that real neuropathy wouldn’t start in wrists or under the knees and its intensity wouldn’t change, what do you think?). They got worse once I got really anxious again, most burning was on the top of my hands (weird place). When I went for a longer walk I had burning feet. It went away but scared the crap out of me. Generally it gets worse when I am stressed as the burning spreads and gets better when I calm down but in general I am anxious all the time. It never goes away totally. I now have had wrist and finger pain for a couple of days (very weird pain, different spots, sometimes dull, sometimes burning, sometimes pinching, sometimes on the skin, sometimes deeper) plus some random pains in the body which I am hyperaware of (shooting, pinching, burning). The hand pain appears when I start doing something. Rheumatologist found nothing. I will need to see a neurologist or maybe other doctors as well. I am so scared :(

Could TMS hit me all of a sudden in the way I read about and feared the most - neurological problems? I think I already had TMS big time as I have had bad stomach problems for years and guess what, now that I have a new worry, the stomach issue is still there bit I can eat more and it doesn’t bother me too much. I am absolutely terrified. I have health anxiety, anxiety disorder and I am scared I will get worse and be in pain forever. I fear that I will have to stop my photographer career and will have to stop doing all the things I enjoy. I will be grateful for any tips and words of wisdom.
 
Your story mirrors mine: I scared myself into neuropathic pain. What I had was pure TMS, except doctors diagnosed me with carpal tunnel syndrome and wanted me to take tramadol, have steroid injections and other harmful stuff. I fully recovered without any meds.
 
Hi, thank you for your reply. Did you also have some wierd neuro symptoms? I am terrified, really. It might not be that painful but it is so scary :(
 
Hi jula. I share some similarities with your case. There is a book "Hope and Help for Your Nerves" by Dr. Claire Weekes. I found it to contain a lot of useful and hopeful tidbits.
 
Thanks, I have Sarno’s, Ozanich’s and Schubiner’s books. I haven’t read them all yet, I just read some chapters and get the general idea. I know I definitely have the type of personality that makes me prone to TMS. When I have read them I will check what you recommend.
 
TG957 said:
I had pain, uncontrollable muscle contraction and more. Check here.

https://www.tmswiki.org/forum/members/tg957.4263/ (TG957)
Click to expand...
I am reading your book. It really resonates with me, especially the part with emotions and anxiety, I feel as if it was written by me. It certainly gives me hope :)
My symptoms are not that severe but they are changing and that paired with my level of anxiety and constant fight or flight response make it really hard as I am terrified it’s an illness that is progressing. It will probably take me a while to believe it’s TMS but to date I have a couple of proofs:
1. I have always been told by docs that my 7-year-old stomach problems stem from stress (I had gastritis symptoms with no gastritis, GERD without any visible damage). Now that I have problems with hands - the stomach is way better, I don’t have to be that careful with my diet (I was on a 15 product diet). I still have some discomfort but don’t really care.
2. I have a history of OCD, anxiety, depression. I thought it we są result of my stomach problems but now I think it’s the other way round.
3. My recent symptoms migrate a lot - I have had pain in my knee, hip, back, stomach, head, wrists, arms, neck, fingers, ankles, toes in the last 2.5 weeks. The types od pain I had - shooting, burning, cramping, pins and needles, pinching, pressure. Now the pain is concentrated in my hands but it’s not constant and changes a lot (different places, different sensations). When I am occupied with something it gets better, it’s the worst when in bed or sitting still.
4. It all started now after a difficult decision I made with my husband (with which I don’t feel all ok about, there is definitely an internal conflict and the back pain started on the day we made the decision). But what concerns me is that I had just finished an antibiotic associated with possible permanent neurological side effects, but I believe my symptoms might be piggybacking on that fear and the horror stories I have read. My stomach problems starter after I quit my first job ever which was not suitable for me and made me believe I would not be good at any job.
5. My mind-body connection is powerful - it sent me to ER convinced I had inflammation in the whole of my body only to find everything was fine. I was in such a pain I couldn’t walk.
6. I developed insomnia and have bad anxiety at night and upon waking up
7. My personality - I am really sensitive, vulnerable about which I seem to have forgotten for years, I suppressed that sensitivity a lot, I thought I was laid back and calm but I’m definitely not. I blocked out many emotions, I don’t know how to find a safe outlet for them. I catastrophise a lot, I am a pessimist and obssess about health issues, I cannot remember how it is to be healthy and live without being occupied with one’s health. I think about my physical state 100% of the time.

I hope I can work it out but it sure seems scary and overwhelming.
 
jula said:
Hello! I decided to write here as I will really need some support. I was diagnosed with Lyme disease and took antibiotics. One of the ones I took is associated with rare but serious side effects (it can cause tendon and neurological problems). I realised it after taking it and I read horror stories about it. I developed horrible anxiety as one day my jaw started hurting, then I had some burning in my hands and every day brought a new symptom and horrible anxiety. Probably I was already in a vicious cycle. I got so scared my hands, arms, legs behind the knees were on fire and I had an impression all my tendons hurt. I didn’t sleep for 3 days as I felt that I was suffocating. I felt pain everywhere, I took tramadol and sleeping pills and nothing helped. I couldn’t walk or do things. My family was terrified. I was finally taken to the hospital and they run blood tests, checked my heart and breathing and sent me home. The blood test was perfect, no inflammation - I immediately felt better and tried to convince myself everything will be fine and it was probably just one big somatization from the panic attack. But after a couple of days I again started feeling more anxious. I still had some burning and pins and needles (but I think that real neuropathy wouldn’t start in wrists or under the knees and its intensity wouldn’t change, what do you think?). They got worse once I got really anxious again, most burning was on the top of my hands (weird place). When I went for a longer walk I had burning feet. It went away but scared the crap out of me. Generally it gets worse when I am stressed as the burning spreads and gets better when I calm down but in general I am anxious all the time. It never goes away totally. I now have had wrist and finger pain for a couple of days (very weird pain, different spots, sometimes dull, sometimes burning, sometimes pinching, sometimes on the skin, sometimes deeper) plus some random pains in the body which I am hyperaware of (shooting, pinching, burning). The hand pain appears when I start doing something. Rheumatologist found nothing. I will need to see a neurologist or maybe other doctors as well. I am so scared :(

Could TMS hit me all of a sudden in the way I read about and feared the most - neurological problems? I think I already had TMS big time as I have had bad stomach problems for years and guess what, now that I have a new worry, the stomach issue is still there bit I can eat more and it doesn’t bother me too much. I am absolutely terrified. I have health anxiety, anxiety disorder and I am scared I will get worse and be in pain forever. I fear that I will have to stop my photographer career and will have to stop doing all the things I enjoy. I will be grateful for any tips and words of wisdom.
Click to expand...

Hello Jula,

I am on day 20 of the program and this is my first post as I have had a lot of the same symptoms as you and hope that sharing could help. I constantly searched for people who had neurological pins and needles and numbness and tingling but only found mostly pain as the primary symptom. It was disconcerting and I questioned my TMS diagnosis. I continued the search and have found people that suffer from the same types of symptoms as I do and am now committed to my diagnosis. I suffer/suffered from numbness and tingling, stabbing, and pins and needles in my: hands, feet, shins, face, elbows, middle back, lips.... The most frightening aspect was the impact that it had on my favorite and relaxing thing to do-guitar and well as the things that I carry great responsibility for-firefighting, cooking for family, housework... After reading Sarno, TMSwiki posts, and Ozanich; I came to realize that my repressed rage and anguish showed up in the very places that gave me the most pleasure in life-my hands for guitar, my elbows for lifting weights, and my legs for cooking, my low back for fitness. My OCD only made it worse as I started to fill the prophecies of doom that I anticipated by feeding the fear cycle, ie. "If I can no longer play the guitar due to the numbness than will I also lose the ability to cook for my family?" Sure enough, my lower legs would go numb within 5 minutes of prepping food. I also created a lot of stress and anxiety by researching the most extreme and rare diseases to account for all of the weirdness-I had lyme in the past and thought it resurfaced, I studied MS for days, what is amyloidosis,... I started to get panicky each time that I found "my" new disease and eventually I started to have hypertensive crisis'. I started to live my days out on the floor in misery and anguish at the seemingly rapid turn of life. Over the course of 6 months, I went into the allopathic machine and was only offered symptom control, pills, despite the fact that every test result was good. I ruled out serious conditions and acute structural trauma, now it was time to look elsewhere.

My disillusion with the the allopathic money machine was overwhelming and that is when I found Sarno and started to discover myself and be more accepting of who I am, what I have done, and who I may become. My OCD and perfectionism is part of what makes me who I am and is part of what people love me for. Acceptance of myself as a good and loving person has been hard, but has led to a lot of stress and anxiety relief as well as symptom relief. I am only 20 days in but I wanted to share with you that one month ago, I was looking for a way out of this physical life. Today, despite ongoing symptoms, I see light and possibility and the anxiety is rapidly waning.

Lee
 
But what concerns me is that I had just finished an antibiotic associated with possible permanent neurological side effects, but I believe my symptoms might be piggybacking on that fear and the horror stories


Hi Jula,
I find with OCD I am super suggestable. Reading the worst possible side effects is "catching". I have developed OCD thoughts I have read about...and I always think I have the rarest worst case problem if I have read about it...also when my pain is on its way out I notice my OCD act up. This happens enough that I know it is connected. Funny enough..I am not afraid of catching Covid...it is too "real"? I only stress about chronic pain syndromes that sound scary and long lasting..
 
rutherford11 said:
I constantly searched for people who had neurological pins and needles and numbness and tingling but only found mostly pain as the primary symptom.
Click to expand...
@rutherford11 , what you describe is also known as neuropathic pain. There were many people here who posted about it, me included. It is TMS, no doubt about it. There are quite a few people on the forum who recovered. You are on the right track and you will recover, given patience and faith in the TMS approach.
 
jula said:
I hope I can work it out but it sure seems scary and overwhelming.
Click to expand...
@jula , fear is normal, it is a healthy emotion. What matters is what you do with it, whether you let it overpower you or figure out how to move forward despite your fear. As long as you don't give up just because you are scared, as long as you continue building up your confidence, you will succeed. I can see from your post how your pendilum swings from believing that what you have is TMS to disbelief and despair.

We all have gone through this stage. As long as you make a deliberate effort to deal with your fear, by hook or by crook, as long as you continue trying to convince your reptilian part of the brain that you are doing the right thing, you will get there.

I highly recommend everybody to listen to audio recordings by Claire Weekes. I found for myself that listening has much stronger impact on me than reading. Hearing her voice had a magic effect on me and I would play her audio several times a day, for months! Also, videos with Sarno were incredibly comforting, so I repeated them day after day. It is a different way of sensory feed into your brain and it may be more effective than reading.
 
Last edited:
TG957 said:
@rutherford11 , what you describe is also known as neuropathic pain. There were many people here who posted about it, me included. It is TMS, no doubt about it. There are quite a few people on the forum who recovered. You are on the right track and you will recover, given patience and faith in the TMS approach.
Click to expand...

Thank you, I never really looked up the definition of Neuropathic pain, makes sense now. My symptoms started to change from numbness/tingling to dull pain while I was reading Sarno. I replaced "pain" with "numbness" in my mind whenever I came across it in the books and my symptoms reverted back to numbness-sensitization, symptom empathy, and conditioning at work there. Now it is kind of funny in retrospect as the changing symptoms were evidence of TMS and the jig was up.
 
rutherford11 said:
Thank you, I never really looked up the definition of Neuropathic pain, makes sense now. My symptoms started to change from numbness/tingling to dull pain while I was reading Sarno. I replaced "pain" with "numbness" in my mind whenever I came across it in the books and my symptoms reverted back to numbness-sensitization, symptom empathy, and conditioning at work there. Now it is kind of funny in retrospect as the changing symptoms were evidence of TMS and the jig was up.
Click to expand...

Once when feeling lots of neuropathic pain in my arm and being in panic state about it, I had a "jig is up" experience. I was reaching into my washing machine and felt a cold electric sensation shoot up my arm and froze in fear thinking that things had started getting worse. Then I looked and realized my arm was touching a small piece of metal on edge of the machine...i ran my arm against it again purposefully and the sensation was just cold metal. Haha! I started to really heal after catching my mind that time.
 
TG957 said:
@jula , fear is normal, it is a healthy emotion. What matters is what you do with it, whether you let it overpower you or figure out how to move forward despite your fear. As long as you don't give up just because you are scared, as long as you continue building up your confidence, you will succeed. I can see from your post how your pendilum swings from believing that what you have is TMS to disbelief and despair.

We all have gone through this stage. As long as you make a deliberate effort to deal with your fear, by hook or by crook, as long as you continue trying to convince your reptilian part of the brain that you are doing the right thing, you will get there.

I highly recommend everybody to listen to audio recordings by Claire Weekes. I found for myself that listening has much stronger impact on me than reading. Hearing her voice had a magic effect on me and I would play her audio several times a day, for months! Also, videos with Sarno were incredibly comforting, so I repeated them day after day. It is a different way of sensory feed into your brain and it may be more effective than reading.
Click to expand...
yes, you have seen right through me. At one point I am sure it’s TMS and feel I can beat this, but as a new symptom occurs I go crazy, panic, cry. At this point I don’t know what to do. I am waiting for an appointment with a neurologist which I fear of course but this might give me some answers.
 
Lonewolfbunny said:
But what concerns me is that I had just finished an antibiotic associated with possible permanent neurological side effects, but I believe my symptoms might be piggybacking on that fear and the horror stories


Hi Jula,
I find with OCD I am super suggestable. Reading the worst possible side effects is "catching". I have developed OCD thoughts I have read about...and I always think I have the rarest worst case problem if I have read about it...also when my pain is on its way out I notice my OCD act up. This happens enough that I know it is connected. Funny enough..I am not afraid of catching Covid...it is too "real"? I only stress about chronic pain syndromes that sound scary and long lasting..
Click to expand...
Same. The virus didn’t scare me but the neuropathy sure did.
 
rutherford11 said:
Hello Jula,

I am on day 20 of the program and this is my first post as I have had a lot of the same symptoms as you and hope that sharing could help. I constantly searched for people who had neurological pins and needles and numbness and tingling but only found mostly pain as the primary symptom. It was disconcerting and I questioned my TMS diagnosis. I continued the search and have found people that suffer from the same types of symptoms as I do and am now committed to my diagnosis. I suffer/suffered from numbness and tingling, stabbing, and pins and needles in my: hands, feet, shins, face, elbows, middle back, lips.... The most frightening aspect was the impact that it had on my favorite and relaxing thing to do-guitar and well as the things that I carry great responsibility for-firefighting, cooking for family, housework... After reading Sarno, TMSwiki posts, and Ozanich; I came to realize that my repressed rage and anguish showed up in the very places that gave me the most pleasure in life-my hands for guitar, my elbows for lifting weights, and my legs for cooking, my low back for fitness. My OCD only made it worse as I started to fill the prophecies of doom that I anticipated by feeding the fear cycle, ie. "If I can no longer play the guitar due to the numbness than will I also lose the ability to cook for my family?" Sure enough, my lower legs would go numb within 5 minutes of prepping food. I also created a lot of stress and anxiety by researching the most extreme and rare diseases to account for all of the weirdness-I had lyme in the past and thought it resurfaced, I studied MS for days, what is amyloidosis,... I started to get panicky each time that I found "my" new disease and eventually I started to have hypertensive crisis'. I started to live my days out on the floor in misery and anguish at the seemingly rapid turn of life. Over the course of 6 months, I went into the allopathic machine and was only offered symptom control, pills, despite the fact that every test result was good. I ruled out serious conditions and acute structural trauma, now it was time to look elsewhere.

My disillusion with the the allopathic money machine was overwhelming and that is when I found Sarno and started to discover myself and be more accepting of who I am, what I have done, and who I may become. My OCD and perfectionism is part of what makes me who I am and is part of what people love me for. Acceptance of myself as a good and loving person has been hard, but has led to a lot of stress and anxiety relief as well as symptom relief. I am only 20 days in but I wanted to share with you that one month ago, I was looking for a way out of this physical life. Today, despite ongoing symptoms, I see light and possibility and the anxiety is rapidly waning.

Lee
Click to expand...

I do the same, my symptoms change a lot and as soon as something new arises I check it and what happens next is totally out of control. I always think about the worst case scenario.
 
I'm so sorry for your suffering. I know others have already said it, but it was one of the most important concepts in my healing process so I'll repeat it.... one of the things that is scaring you the most is how the symptoms are changing and moving--different places and different "flavors". This thing that scares you can also be one of your best friends on the healing journey. Because injuries, tumors, and other structural problems just don't move around like that, do they? Once you realize that the very changeability of your symptoms is evidence of TMS it turns something terrifying into something optimistic!

Here's how I look at it... When the pain moves to a new spot, it has left an old spot free. That spot--the nerves, tendons, muscles in that place--is capable of being pain free. It is perfectly fine! But I just idn't notice this at all because I was focused on the new hurt. When something that used to pinch starts to burn, the good news is that the pinching is gone, but I didn't even notice that part because I can only see the burning. When the burning changes to tingling, then it's proof that my body doesn't have to burn at all...there is no innate "burning problem" in my body. But I didn't even see it because the tingling was terrifying. At least that was my experience.

So for me, healing has been just helping my body do what it was already doing.......changing places and sensations and symptoms. But instead of one symptom disappearing to be replaced by another, my symptoms just disappear. That's it. They were ALREADY disappearing all the time, so I KNEW they could DO THAT. It's just that before, they would be replaced and now they aren't (or not too often anyway, and when they are I know how to help the new thing fade away quickly).

Once I realized that the changeability of my pain and rashes and IBS and everything else was proof that the whole damn thing was TMS, it really jump started my path to healing. I'm not fully cured yet, but the progress has been tremendous and I'll get there. I started with a looooooot of symptoms so it's not too surprising that it is taking time. I'm at about 90% cured so far. You can do it too! My heart goes out to you because I think I know how deep the fear you are experiencing is. But don't give up. You can do this!

I strongly strongly strongly recommend Alan Gordon's program on this wiki...the whole thing but especially the part about somatic tracking. It was somatic tracking that really allowed me to understand that the "changiness" of my symptoms was actually the key to the cure. Good luck! Don't give up!
 
jula said:
yes, you have seen right through me. At one point I am sure it’s TMS and feel I can beat this, but as a new symptom occurs I go crazy, panic, cry. At this point I don’t know what to do. I am waiting for an appointment with a neurologist which I fear of course but this might give me some answers.
Click to expand...
Jula, it is called anxiety, general anxiety syndrome multiplied by fear. I have been there. I can only repeat this:

I highly recommend everybody to listen to audio recordings by Claire Weekes. I found for myself that listening has much stronger impact on me than reading. Hearing her voice had a magic effect on me and I would play her audio several times a day, for months! Also, videos with Sarno were incredibly comforting, so I repeated them day after day. It is a different way of sensory feed into your brain and it may be more effective than reading.

It may sound funny, but listening to the same thing 3 times in a row had a calming effect on me. Used along with meditation, it did the trick.
 
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